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Anne G67

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Congenital Heart Information Network
July 31, 2012

My family has been involved with CHIN for 11 years in the capacity of donor, volunteer and client. Our youngest child was diagnosed with Hypoplastic Left Heart Syndrome and has required multiple open heart surgeries, heart catheterizations and other medical interventions since birth. Early on especially, I could not leave home much due to her medical fragility. We did not know anyone else locally who had gone through anything similar. It was a very scary and lonely time, even with support of family and friends. Through CHIN, I came to meet other families going through the same things. If I had questions, fears, joys, I knew I could turn to my CHIN family for answers and support. Truly, I do not think I would have gotten through the early years with my daughter without needing counseling if it hadn't been for CHIN. Today, we have gone several years without more than annual visits. But I still rely on CHIN for information about the latest research and treatments. CHIN members are very well educated about Congenital Heart Disease treatments, as well as school-related issues. Even though my daughter is thriving today, I still rely on CHIN for information and support. Without it, I would be at a loss for information, even though I read many studies. Studies just aren't the same as hearing first-hand accounts of the latest treatments and problems for those with HLHS. CHIN fills that void.

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When was your last experience with this nonprofit?

2012

MY ROLE:
Donor